An integrative journey through breast cancer

Monthly Archives: May 2015

[continuing the saga of what happened after my mastectomy, when I woke up from surgery to find that my left arm was paralysed. I apologise if this seems like wallowing in the experience, but I’m writing this partly as therapy, and also for any other poor bugger who has to go through what I did. I remember hunting on the internet for similar experiences, to discover there was nothing. This was totally outside the realm of most mastectomy patients. Hopefully anyone going through the same will walk with me and know what to expect and know you are not alone!]

Three weeks after the mastectomy, I had to go back to the hospital for another electromyography (EMG), a type of muscle test.

A needle is inserted through the skin into the muscle tissue. This needle is connected to an oscilloscope that measures the activity of the nerve.

On this second visit, I asked to see the results from the test conducted two days after the mastectomy. For some reason, although I had asked (and so had the physiotherapist), the results were not made available which made me very suspicious.

There’s been a gradual but steady rise in the number of immunotherapy articles, featuring cancer vaccines.

I think what people need to realise is that a cancer vaccine is not like a flu vaccine where a one-off will provide cover for that season’s viruses. A cancer vaccine has to cope with a myriad of different metabolic factors, the state of the patient’s immune system etc.

Often cancer vaccines require a course of vaccines for as long as the person lives. The nature of the beast is that it is different in everyone and it mutates, presenting different faces to evade and disguise itself from the body’s immune system. Multiple vaccines has to be administered to adapt to this enemy that wears a thousand masks. If the person is lucky, the immune system will wake up and do the rest. But if not … there are no guarantees that cancer vaccines will work for everybody.

I visited Prof Nesslehut, the world’s expert in dendritic cell vaccines and other immunotherapies, and was advised that a course of vaccines would start at one per month for six months, then tapering down to three-month and six-month intervals. Over a five-year period that would add up to about Euro100,000 depending on the variants used.

So personalised immunotherapy that is affordable is yonks away unless you’re lucky enough to get onto a trial.

It’s the start of the 2014 San Antonio Breast Cancer Symposium which means loads of research into breast cancer sub-types and treatments, which this week is heavy on TNBC.

Since I last posted in December 2014 I’ve been through a divorce, a house sale, the start of conventional cancer treatments, and oh yes … my beloved favourite cat died of cancer. There, that’s out of the way now. My life is so un-funny it’s funny. I do hope that by telling you all this it gives you a sense of gratitude about whatever shit is going on in your life. All around me my colleagues were having babies, buying houses and getting married and going on honeymoon. I felt like the evil Black Fairy at a christening bringing the Anti-matter of Happiness. They should name a Black Hole after me. Hence the long silence, it’s been hard to summon any motivation to post when I was trying to juggle so many balls at once and also wanting not to share too much misery with the world! But I got a nice e-mail from a blog reader asking after me. How much of it was curiosity as to whether I was still alive [which is a common question if you see a cancer patient hasn’t updated their blog for 6 months], or true concern, I don’t know, But I was touched by his kind words. I’ve also seen from the stats that my blog is still being read even though I’ve been quiescent. So it’s been a nice boost to know I’m helping someone. Or at least I hope I am. I’ve got a fearful lot of catching up to do, but it might prove therapeutic and help me get some sense of getting somewhere. So here I am. Hello 2015.

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